The President’s budget has dominated headlines since it was released yesterday, prompting concerns from many in the healthcare sector and questions among advocates about what it means. You can find the budget and supplemental materials here.
Federal Budget Process
This two minute video from AAAS explains the long process of creating and passing the federal budget. While the President makes a recommendation, it is up to Congress to pass funding bills. It is important for rare disease advocates to contact their legislators to request funding for the federal programs they support.
Funding for National Institutes of Health (NIH)
The proposed budget would reduce funding for NIH by $5.8 billion. Congress recently passed a budget with an increase in NIH funding for the remainder of FY2017 despite the President’s call for a reduction, and there is bipartisan support for biomedical research funding. Many health advocacy groups voiced opposition to the proposed cut, as did the Chairman of the House Appropriations subcommittee that oversees health.
“The drastic cuts in the Administration’s 2018 budget for the National Institutes of Health (NIH) are a significant blow to medical research and the patients who depend on it.” –United for Medical Research
“Steep funding cuts for the federal health agencies are counterproductive at a time when innovative research is moving us closer to identifying solutions for rare diseases, new prevention strategies to protect Americans from deadly and costly conditions, advances in gene therapy, new technologies for understanding the brain, and treatments that harness the ability of our immune system to fight cancer.” – Research!America
Funding for Food and Drug Administration
The Administration’s proposed budget would cut funding for FDA by $871 million and increase the amount of user fees. The user fee agreements between FDA and industry were finalized last year and the reauthorization process is underway in both the House and the Senate. The user fee agreements must be reauthorized by July 31st or the FDA must begin to notify the staff who review new medicines ad devices of potential layoffs.
“We are concerned that should the FDA, as a consequence of this proposed budget shift, become significantly underfunded, the agency will have to choose among important public health priorities. Beyond the needed investment in FDA’s core functions, sufficient funding is necessary to spur innovation and provide critical oversight initiatives for drugs, biologics, and food.” – Muscular Dystrophy Association
Funding for Other Health Programs of Interest to Rare Disease Community
The budget also includes a cut of nearly 20% for the Children’s Health Insurance Program (CHIP) as well as cuts to Medicaid. A speaker from the American Academy of Pediatrics explained the importance of both programs at the Legislative Conference during Rare Disease Week on Capitol Hill earlier this year. You can access the video and slides here.
What You Can Do to Impact the Budget
To start, call or write your legislators to ask them to support funding for the federal programs that are most important to you. You can find their contact information here.
You can also participate in In-District Lobby Days during the summer Congressional recess from August 7th through September 6th. When you register, you can specify when you are available and how far you can travel. We’ll schedule meetings for you in the local offices of your Representative and Senators based on that information, and hold a webinar on July 28th to help you prepare.